Or, One Man's Long Fight With Both EDS and NHS.

dislocations

Now, we get down to the bare-bones of EDS-HM; The dislocations. This is the bit that causes the most comment, the most horror, and is probably the most unusual and characteristic symptom of the condition. It’s also the thing that’s usually what gets an individual zebra to go from “Eh, I’m just a bit odd” and to first run screaming to their doctor, suddenly needing a diagnosis.

The dislocations tend to first happen at the point of big hormonal changes; Right at the start of puberty (somewhere between 9-14), after the end of puberty and the start of proper adulthood (18-25), during menopause or when the testosterone levels start falling (40-50), or during hormone therapies (whether contraceptives, HRT, gendered hormones etc) – The most common being either at the start or end of first puberty.

They happen at the slightest provocation, and in fact they probably happen our whole lives, but when they get suddenly worse – More painful, harder to pop back into place, more frequent – they turn hypermobility from “That party trick where you put your foot on your shoulder” into “That thing that keeps you in bed all day, or sometimes makes you fall down the stairs.” The official term for the types of luxations that we get (Subluxations and dislocations collectively) is “With or without trauma” – Meaning that sometimes they happen because we’ve been hit, and sometimes they happen because it’s Tuesday. For the record – A subluxation is basically an incomplete dislocation, one which either jams on the edge of the “socket” or returns to its usual place without much intervention. Unfortunately, the word “subluxation” has also been stolen by unscrupulous chiropractors to mean (and I am not making this up) “Tiny misalignments of your spine that cause all sorts of diseases”. So, saying the word in front of many physios and even many doctors will result in disbelief and the horrible assumption that you’re talking about something counterfactual and thus that everything you say is suspect. And correcting them, and explaining what a medical sublux is, makes a lot of conversations harder, since once a medical professional is on the back foot, and thinks you know something they don’t, they have the tendency to go into angry, defensive mode and refuse to engage any further. Almost exactly like a small child that wanted chocolate AND strawberry ice cream, so when offered chocolate, they spit it out and pout. And this is a problem.

Because dislocations hurt. Every time. It’s not really something that gets better over time, although you do get used to it, so it’s less frightening after the first few years of them becoming regular. A particularly bad one still feels like the world is ending (A particularly memorable hip dislocation, whilst snowed in at a friend’s house, sticks in the mind years after it happened, and brings a visceral stab of pain with the thought) but the everyday run-of-the-mill luxation, which just hurts, and makes the limb unusable or at least agony for five or ten or eighty minutes, is… Well, it’s not fine, but it’s normal. You know those injuries that make rugby players cry and curl up and be stretchered off the pitch, and possibly end their career? Imagine a few dozen of those, a day. Painful.

The worst thing about this is that they often slip back into place on their own, or are only visible from a very specific angle on x-ray (which has no perspective, and of course has no “before” photograph), so if you turn up in A+E, still screaming in pain from one, there will often be nothing to show for it on the observations, and it takes a good orthopaedic to say “No, I can see what the problem is, or was, and this needs to be managed”, rather than just a bland “computer says no”, because they took the x-ray from the wrong angle.

The other problem with dislocations is that they make you really rethink what’s a “joint” and what isn’t. Asked to name joints, many people would say something like “shoulder” or “knee”, but there’s at least four ways that the shoulder can go wrong (Glenohumeral, scapulothoracic, acromiclavicular and sternoclavicular joints, before we even get into the ribs shifting and detaching at either the spine or the sternum ends) and a lot of things that you wouldn’t normally think of as having joints can nonetheless decide to luxate. How often do you think about your carpus or tarsus? The tiny mesh of vaguely cube-shaped bones in the hand and the foot. There’s eight bones in each carpus, making up eighteen joints, including where they join the metacarpus and the radius and ulna. And they can all, subtly, go to pieces. Likewise the tiny bones of the inner ear. Or the hyoid, slipping around between its tendons, a long way from any other bone. Or the unfused vertebrae of the sacrum and the seams of the pelvis. In some cases, even the sutures of the skull.

The final problem with a dislocation is that when it happens in public, if someone else sees it, everything stops. Even if you could have just shoved it back with a bit of a moment alone and a slip of whatever painkillers you’re using, if someone else sees it, you have to do the hospital dance – Even if not literally going to hospital, at least spending ten minutes justifying why you’re not going to hospital, and then probably another twenty talking about what’s wrong with you.

Horrible things. And there’s not much to do for them but to manually relocate as best you can, and then lie still, possibly with painkillers and muscle relaxants, until they get better. Or, more realistically, to shove them back into socket with your other hand, and then get on with whatever you were doing, because time stops for no man.

10.12 – Try to sit up to take pressure off right hip, which is subluxated. Shooting pains across pelvis and down right leg.

10.17 – Start hand-typing essay, right wrist luxates more than once per minute for the next hour as I work. Throat probably too sore and creaky from previous day’s morphine to speech-to-text effectively.

16.51 – Prescription arrives, with no axsain and a note saying “Re; Capsaicin. Needs to see doctor.” I roll my eyes that they are worried about prescribing me chilli sauce. I phone the GP, and the receptionist tells me I need to book an appointment. First one available is the 8th of April, no phone appointments possible. She suggests that she can get a tube to me by tomorrow morning, when the pharmacy will be closed, and asks me to phone her back before seven to check that she’s actually done so. I am not filled with confidence.

18.49 – Drifted, until being woken up by by still-luxated right hip. Took morphine syrup.

20.08 – Rapid luxation and reduction and luxation again of right hip. Whole right leg is rotated outwards to the point that the foot almost points backwards.

21.59 – Took laxative in attempt to lessen pain in lower back (sometimes this works)

00.00 – Realise that I’ve spent most of the day basically flattened by fatigue, confusion, exhaustion and unable to keep track of what’s been going on. Shrug shoulders, call it a productive day anyway.

Another major win – If I can manage a win per week, I will be happy – was discovering the local naturist swim.

I’d intended to go back in November, where instead I broke my leg, and then had somehow been busy every time the session was on since.

Signing up was a bit like joining the Masons, or something – Not meant to say exactly when it is, or where, and specifically not meant to say who was there. Arriving, I said “One to swim, please!” and got the guilty-sounding reply of “The normal swim, or…”

I quickly confirmed that I did mean the naturist swim, and suddenly everyone was all smiles and welcome – I was led through to the poolside, introduced to everyone with a broad arm gesture, then generally got to swimming.

As ever, I was the fastest person in the water, and one of the youngest (Though there was a handful who were definitely younger than me, or about the same age), and it was generally lovely to feel warm water, and steam, and to be around other people for a short and defined period of time, having light-hearted, basically meaningless conversation. Everyone was slightly over-keen to engage in conversation, but they avoided the usual topics (Crippledom, tattoos) and instead I discovered that a huge number of the local naturists are also bikers (I knew that there was a big naturist-biker overlap, but it’d hadn’t occurred to me what that would mean in practise). Which was a delightful realisation. My complete inability to remember names means that all the bikers are now stored in my memory by their scoots, and all the non-bikers are stored by vaguely where they live. I’m sure I’ll get people’s names eventually, and they seem like generally the type of people that would forgive me for forgetting. I ended up nicknamed within about ten minutes of meeting him by an old gent who looked like a second world war flying ace, and was generally accepted by everyone there basically immediately.

It is basically true that, absent social clues like clothes, we all start being much nicer to each other. Or possibly just that the kind of people who go to naturist events are more prone to be nice to each other in the first place. I was (slightly awkwardly) hugged by a woman who was probably about my age, and who swapped numbers with me and who immediately wanted to be friends. I must admit, I was about as gleeful – We’d both admitted to not seeing people very often, being not-far-off-housebound, and generally finding it difficult to get into conversations. It was refreshing to have this just be “another fact” rather than a point of shame.

The bath itself is one of the late Victorian ones, with the massive skylight, wrought-iron galleries, and plumes of warm steam in the air, making the swim itself look a bit like an odd re-enactment of Jean-Léon Gérôme’s Harem Bath painting, complete with people showering in the background, small groups sitting chatting with their feet in the water, and (sadly) one person limping around in the foreground, being held up by one of their fellows, in this case with a dislocated hip. It took about ten minutes in the steam room to heat it up and put it back together, but other than that it was just a lovely evening out.

Definitely going back next time. It’s a short, pleasant ride away from home, at a convenient time, and with nice people. Plus, it’s exercise – After three months of no-swimming after three years of swimming at least three nights a week, I am feeling floppy and useless. Hopefully this will make me more mobile and fitter again, as well as giving me a designated time to go out, forcing me to interact with other humans, and getting me some very simple regular bike time.

Today was overall a win. I went out to the charity shops, which I now plan to do once a week as a leg-stretch and an attempt to do some weight-bearing exercise.

An armful of purchases:

– One big lump of hammer-broken red-brown-orange-purple cullet glass, that’s about the shape and size of a lung, which reminds me of a similar lump of glass which my great-aunt used to keep for luck at the bingo. Hers was green, and we have no idea where it is now, other than that I hope it’s still in the family. I’ll photograph the one that I have, and ask my Mam if she remembers it.
– One silver candlestick, to add to the slightly Victorian feel of my living room and also because candlelight is incredibly relaxing when in pain.
-One crystal ship’s decanter, to add to the collection (or I may yet give it away as a present).
– One massive industrial weaving shuttle, for keeping my medication in – Sadly I couldn’t afford to buy the second one, which had artificial flowers glued into it and was a proper bit of Yorkshire folk art.
– One cheap denim jacket, on which to sew my NABD patches and assorted others.
– One turned brass goblet, which looks like it fits into the category of “Things that someone made whilst working in manufacturing, when they should have been making something else” which is my favourite category of things (Probably because much of my grandparents’ house when I was little was furnished with woodwork and metalwork that my grandfather and great-grandfather had made when they worked in the shipyards)
– One walking stick, with ice crampon.

All for less than about £15 total, and all of which will get good use.

But there was also a disaster – There is always a disaster.

At the hospice shop, just as I was about to leave – And after a lovely twenty-minute conversation about Northern glassworking and history and stuff – one of the staff cornered me.
“Have you had an operation?”
I wasn’t immediately uncomfortable about the question, but her body-language bothered me. She’d cornered me into the shop, between two aisles, so I couldn’t get out or away, or even turn aside.
“Ha,” I said “No, just unlucky.”
99.8 percent of the time, people understand that this means that I don’t want to talk about it.
“Oh, so are you weak then?”
I didn’t answer, I just sort of shrugged noncomittally and tried to step backwards. She stepped forwards, and asked again, a bit louder;
“Are you weak? Is it weakness? Or is it pain? Or do you get tired like?”

I realise now that I should have just said “I don’t want to talk about it”, but it’s very hard to say that when you’re trying to stay polite, and when your mental conversational options are either “The truth, the whole truth and nothing but the truth” or “Fuck you and the goat you rode in on”.

“Dislocations.” I replied, then as her arm came out to pat me on the back, I added “I’m really fragile, I basically can’t be touched.”

So she took this as an invitation to hug me around the shoulders, as tightly as she could.

Both shoulders, one of which was already pretty stressed from holding me upright on the stick, and the other which was already under stress from having a heavy bag dangled off it, concertinaed inwards.

I let out a little scream, and crumpled towards the floor. She tried to pull me up by the arm, as I protested “No, no, please let go of me, I just need to get down to the floor. I’m a bit faint. I’ve got two dislocated shoulders.”

After a long few seconds, I was kneeling on the floor, clutching my useless arms and trying to remember how to inhale, and she was standing over me and apologising profusely.

“You’ve gone all red. I’m really sorry!”

And she really was really, really sorry. She obviously cared, and was worried that she’d hurt me, and was having to come to terms quite fast with the fact that she’d crippled someone who was barely upright in the first place.

I shrugged out of my leather jacket, and started popping my shoulders back into their processes. – Both clavicles were out of place, both glehohumerals were out of place. Nothing too complicated, just painful and taking a while to reset.

“Would you like a cup of tea? Or a hot chocolate? Or water?”

I wanted out, as fast as fucking possible, but I still had things to pay for and still had to get back in one piece.

“A glass of water, actually, that’d be good” I said, to get myself some space.

She went off to get one, and I continued re-setting my shoulders. The other assistant came over, bringing a stool for me to perch on, and said;

“Oh you know, we’re really sorry, she’ll not sleep tonight I bet. She didn’t mean any harm. I mean. She couldn’t have known. Can I help at all?”

I thought for a second, mulling over how she definitely could have known, if she’d listened for a second, and pragmatism overcame pride;

“Can you put a hand on the flat of my back here, and push as hard as you can?”

“Ooh, not too hard…” she said, obviously still knowing my condition better than I do, and gave a feeble press onto my scapula. I pushed back, raised my arm, and cracked my shoulder into place. She flinched a bit, then said “I’ve seen people faint with pain from a dislocation before. You must be very brave.”

I shrugged. I wanted to give my speech about how it’s not brave – How every time you say “You’re so brave!” to someone just for living with a disability, you’re basically saying “How aren’t you in an institution?” or “How aren’t you dead?” She started patting me on the shoulder. Repeated taps with a little circley-rub in the middle, basically the worst possible thing to do to a freshly-dislocated shoulder.

“Please, don’t. Be careful.” I said. She stood up and backed away;

“Ooooh, sorry. You know, it’s just instinct. Hard to not.”

Reallyy? Really person-who-met-me-two-seconds-ago, it’s hard for you to not keep bloody touching me?

The first assistant, the one that had started the whole debacle, came back, just as I said;

Honestly, I didn’t think that it would have ever been something that I’d need to explain to strangers. I and my friends tend to hug in an extremely gentle, basically-rest-your-head-on-the-other’s-chest-or-shoulder-and-put-a-hand-on-their-waist kind of way, which is both tremendously rare (Why hug someone when it’s probably going to hurt?) and tremendously intimate (Again, if it’s that rare, of course it has emotional value).

She sat down opposite me, as the second assistant went back to the till, and said;

“So, have you been like this since you were a baby, then? It must be very hard.”

I shrugged.

“It’s not as bad as it sounds.”

“But have you always been like this? Since you were a baby?”

I think that the worst part is when people just repeat questions, when you don’t want to answer them. Where there is no reason for them to ask the question, and no reason for them to need to know the answer. Suddenly I wasn’t the interesting person that knew all about the local mills and the Sunderland glassmaking tradition, I was The Cripple. And people talk to The Cripple about Disability.

“It got worse when I was about twenty. But I’m doing fine. Cracking on.”

“So, can they do anything for you?”

That is the question that I wish could be stricken from the vocabulary of anyone. Sorry, you must reach at least Level Fifteen Friendship before you can force me to confront my prognosis of increasing pain and decreasing function until the bottom of the morphine bottle looks like a lovely destination for a really long one-way trip. Do not just casually ask a disabled person “if anything can be done”. The answer might well be “Well, surgery next year, and then I’ll be abled again,”, or it might be “Lots of medication and physio and hard work”, or “Actually I’m dying”.

Think about that one.

I answered, anyway;

“Painkillers, mostly.”

She looked sympathetic.

“It must be terrible.”

“It’s fine.” I insisted.

She patted me on the shoulder, giving it a good hard shake that re-dislocated it, and I doubled over in pain again. She started apologising, again. This time, evidently, it was at least a little bit amusing – After all, this ridiculous, completely unpredictable thing had happened twice now.

I popped the shoulder back into place, and took an enormous swig of morphine. First assistant tried to catch what was on the label.

“Well,” I insisted, standing up, “I’ve got to be off.”

She helped me into my jacket, and I let her, since that would probably give her some sense of absolution, and she held out a hand for me to very carefully shake.

I went on my way. Feeling like shit and in a lot of pain, and wondering why I was more worried that I’d traumatised two shop assistants than about the persistent, twitchy pain in my shoulders.

In better news – I got out on the bike yesterday, for the first time since the last time I went to the garage, and it was… To go to the garage and buy a mudguard. On the other hand, I now HAVE the mudguard, so I can hopefully ride up to the whittling workshop in the woods tomorrow (Delicious alliteration there). And the day before yesterday, Dearest joined the motorcycling fraternity, with his like being delivered next Wednesday. And he’s joined the NABD too. And our year bars for 2016 have arrived. It’s all very exciting. Might be going to my first rally in May as well, if I feel up to camping…

My right shoulder once again feels like there’s a hot petanque ball stuffed under the scapula. My right hip has exploded.

And about a week ago, I woke up feeling as if I’d slept on an electrical plug, pointy-side-up, right at the base of my spine. At first, I thought I really had – Under the pile of sheepskins and cushions and cashmere throws on my bed, there’s an electric blanket, and the blanket has a big square lump where the wiring is attached. Sometimes it moves around the bed and ends up under some part of me, and I end up with a minor cramp wherever it dug in. This hurt a lot more than usual.

This time, I reached around to feel for the plug, and instead of finding it I found the usual three-inch-thick pad of fleece, and my own coccyx, which was sticking out at 45 degees and so much as touching it felt like the evil version of slamming your elbow into a doorframe. I flipped onto my side, lifted up my knees, keeping my back board-straight since I couldn’t move it without intense pain, and started howling.

The howling brought Dearest out of the shower, who quickly poured the remains of a bottle of morphine down my throat, fed me 4mg of diazepam, 75mg of diclofenac, and managed to get at least one of my legs straightened out and the other supported on a cushion, so that I could relax in place. Half an hour later, I was relaxed far enough to reduce the luxation at least partially, and then half an hour later I reduced it a little bit further, then again, and again, each time the inflammation pushing it a little way back towards a luxation, and each time my work putting it back a little bit closer to “correct”. Two steps forward, one step back. Pain. Pain. More pain. That afternoon, I phoned rheumatology and was told “They’d get back to me in 48 hours”.

A couple of days later, still trapped in bed, Best Friend and Best Friend’s Mum came over for the afternoon to look after me, with Best Friend holding my hand, occassionally massaging the worst of the cramp out of my spine, and generally trying to keep my mind on the cricket and the thought of going on holiday, and off the burning pain in my back. By this point, my shoulder pain had reached the point where I was having to breathe in between shots of pain, which was understandably making me tense and twitchy. Meanwhile, Best Friend’s Mum made me hot water bottles, found cushions to stack my limbs up with, fed me, and washed the dishes so that I’d have something to eat off later.

A couple of days after that, still in bed but starting to shuffle around a bit now, Dearest spent several hours and a lot of diazepam working the spasms and cramps out of my back and shoulders, almost managing to get the right shoulderblade (the one with the white-hot petanque ball under it) to lie flat for a couple of seconds. My tail, by this point, lay almost completely flat to where it belonged.

And now it’s today, and I’ve finally got through to Rheumatology, who aren’t even at StJ anymore, they’re at CA. Dr D will see me at some point in the next month, for my regular appointment, but moved forwards as far as he can because this is fairly serious stuff. He’s had his hours cut, and thus also his number of patients cut, but as far as anyone can tell I’m still one of his.

I’m just about hobbling about the house now – Not well, or with any grace, and still only by taking literally as much morphine as I can tolerate (Having had the last of the diazepam earlier in the week, because obviously I am better off having violent, painful spasms than taking a naughty drug that some people might sometimes enjoy taking for fun) and doing as little as possible Tomorrow, the glazier is coming over to fix one of the window handles, then in the evening I’m taking Dog to the vet’s to get his ten-day checkup for his teeth (He had sixteen teeth removed last Monday. It was a terrifying day for both of us). After that, I’ve got broadly nothing to do until Saturday morning, when I in theory have a univerity tutorial.

Judging by the stabbing pains in my shoulder that’re continuing without respite and making it hard to breathe, I’ll probably not be going anywhere. Oh, and somehow during this hellish week, I’ve managed to finish my own essay for my second TMA and write one about “My EDS experience with reference to using the Internet for support” to be a piece of primary material for someone else’s PhD, which is rather fun. And she’s in the North too, so it’s nice to have met another northern zeb.

I set off with good intentions – Bike into my tutorial, study, coffee in the city, ride over to the garage to pick up some heated handwarmers, then home, then back out again to the 5pm swim at B.

I parked in the University, walked down, put my bags in the tutorial room, and after a couple of minutes, the tutor mentioned that parking in the University was expensive if you didn’t have a permit. I didn’t have a permit so, not wanting to be fined, left my bag and my norgie on my desk and went out to “just move the bike” – Intending to quickly run it around from the University to my usual spot next to the art gallery.

Instead I got stuck for literally an hour and a quarter in the one-way system, looping repeatedly around the city centre and the surrounding industrial wastelands, being led up endless streets that suddenly turned into “No cars or bikes between 2am and 8pm, unless it’s the weekend after a full moon but not when sunrise is between 7.15 and 7.38am.” and trying to find somewhere, anywhere to ditch.

The street next to the art gallery was closed for a Christmas market, shutting off about a quarter of the roads. Another set of streets were shut due to the high winds. Eventually, I got into a car park next to the venue, which was Pay and Display, and since I wasn’t confident on Displaying without having someone steal my ticket, I instead parked in a coulcin-operated disabled bay instead, outside of the car park.

I at least made it to the last forty minutes of my tutorial.

And upon getting out, my bike had been ticketed, for parking in a disabled bay.

I made a mental note to contest is, then decided that since the weather was getting insane, I was just going to go straight to the garage, then bunker down there for a bit and warm up.

Upon getting about halfway to the garage, I decided that I’d rather not be out in the dark, so turned around and headed home instead. The wind, by this point, was brutal gusting up to 80mph, it was like being physically slammed by a big, fast vehicle.

I managed to hold it, on the wet roads, with rainbow oil slicks every few hundred metres, with the wind cutting me across to the point that I could barely hold my lane, until I got to the last hill at the last crossroads, less than two hundred yards from my house.

And then I lowsided. The front wheel hit an oily grating at exactly the same moment as I passed a side-street, which the wind was howling straight down. The bike went down, somehow turning my foot around a hundred and eighty degrees in the process, leaving me lying on my side with my right leg pinned unde the bike, my leg twisted around backwards and pinned under the crsh bar, so that my right foot was facing in exactly the opposite direction to the rest of me.

It took four people to lift me clear of the bike, getting the bike upright as well, and dragged over to the steps of the estate agent. I was doing fine, more worried about my bike than myself, until there was a cup of tea in my hand and I’d started her engine to make sure it wasn’t flooded. And then I realised that my right leg wasn’t just sore, it was wrecked. No way I could put any weight on it.

I got back into the estate agents, aided by M, the first aider and first on the scene – Not a biker, but friends with enough bikers, including a disabled triker, to know that this was normal – who let me curl up on the floor, then helped me out of my boots and out of my leathers, so I was sitting there in my baselayer. Upon getting the trousers about half way down my hip, I heard a high-pitched scream, right on the edge of hearing. It took a second for me to realise it was me.

“That’s what I was worried about” said M. “That hip is all wrong.”

I looked at it, Sure enough, it was dislocated. D, the estate agent, took my feet and got my armour down off that leg, so that I could roll my baselayer up. My calf was bruised already, and my tibia was in front of my patella.

I directed M into my rucksack, to get the morphine, and I drained the bottle.

What followed was a lengthy, incredibly painful, reassembly, with much debate over whether I needed hospital, or how to get home, or whether to ride home, or whether to get Dearest to pick me up, or one of any number of other half-remembered options. Eventually it was decided that M would take me home, me riding the bike at walking pace, him walking alongside, hazards on and being careful.

My leg back in one-ish piece, I was helped onto the bike (Unable to move my own right leg, M had to lift it over for me) and we made a sad procession back to my house. At my door, I wanted to offer M a bottle of whiskey, or chocolates, or something, but after a second’s hug and an exhortion to ride safe, he was gone, a hi-vis clad figure vanishing back into the storm.

And now I’m back home, sincerely wishing that I’d not left the house this morning. Storm Desmond has closed most of the UK, Cumbria is underwater, the valleys are flooding, trees are being blown over, and I’m not going back out in it.

Today I’ve got a migraine, being reigned in with the power of Zomig and soft green lighting.

On the other hand, my dislocated right hip chose this evening to slingshot back into its socket with an audibule “THUNK”, so it now hurts, but moves properly.

And I’ve printed out my whole month’s sleep schedule to take to the doctor tomorrow.

And I don’t want to go to the doctor tomorrow. I have a migraine.

Key:

M is morphine, d is diazepam, numbers in yellow are sleep, b is bike time, w is alcohol, xx is diphenydramine, s is swimming, T is the hour change.

I still find that sawtooth pattern interesting, likewise the way that I seem to always wake up before noon unless I’m really going to be sleep-deprived if I don’t. If I was a betting man, I’d bet something along the lines of “The warming/light cues in the morning are recieved pretty much right, but the ones at night to tell me to switch off don’t work, so my circadian “night” keeps getting moved forwards, and getting shorter”.